Congenital diaphragmatic hernia (CDH) is a birth defect that results in a hole in the diaphragm, affecting about one in 3,000 pregnancies. Depending on its severity, organs such as the intestines, stomach and even the liver move into the infant’s chest cavity, threatening lung development. For parents of babies diagnosed with CDH, the future seems bleak. That is, until they talk to Joy Perkins.
“I'm often the first contact that they make when they call the hospital,” says Perkins, who has worked as the program coordinator for the Johns Hopkins All Children’s Center for CDH for five years. “A lot of that conversation includes answering questions about what CDH is and how we treat it. Many families are simply told they should terminate the pregnancy or not expect any quality of life should their child survive.”
While few hospitals have consistent success in treating CDH, infants treated at Johns Hopkins All Children’s Hospital experience a survival rate of greater than 90%. Having spent nearly two decades working with CDH expert David Kays, M.D., who leads the Center for CDH, Perkins is the familiar voice of hope and direction that parents hear from the time they coordinate their hospital arrival to after they are discharged.
“I try to be a calming voice of reason, to let them know that there is hope and that they’ve called the right place,” Perkins says.
In addition to being an advocate for the families, she is also an educator and primary resource for practitioners in the Center for CDH. We asked her to explain the path she took to becoming a CDH nurse and to share what she loves most about her team.
What led you to become a nurse and work for the Center for Congenital Diaphragmatic Hernia?
My early years in health care were spent as a respiratory therapist. That is when my passion for CDH began. Over the years, I could see more career avenues opening in nursing, so I returned to school to complete my nursing degree. When the opportunity to come to Johns Hopkins All Children’s Hospital and build a world-class CDH program presented itself, it was an offer I couldn’t refuse.
Is there a piece of advice or a motto that guides you?
You don’t know it all. Medicine is always evolving and advancing. If you aren’t willing to learn every day, you’re going to be left behind.
What’s something people might find surprising about you? Do you have any hobbies?
People are often surprised to learn that I am a huge hockey fan. GO BOLTS! I also love spending time on the water and checking out all the beautiful wildlife found in the Tampa Bay area. Spoonbills, dolphins and sharks, oh my!
What is your favorite thing about working at Johns Hopkins All Children's Hospital?
I love being part of a team that saves babies who were given no chance of survival at other facilities. More important, I’m proud to be part of team whose patients aren’t just surviving but are thriving and reinventing the expected outcomes for this patient population.